intractable epilepsy – Page 4 – David Fighting F.I.R.E.S.

by Desirae September 13, 2019 4

David Fighting F.I.R.E.S. Desirae's Devotions

Topic of Conversation

In recent months, the author has learned that her son, David, is a topic of gossip in her hometown’s church communities due to his appearance, which is affected by his medications for a rare syndrome. The author emphasizes her gratitude for David’s life and expresses her commitment to raising awareness about the condition. She urges community members to shift from gossip to support, encouraging them to reach out, pray, and help families facing struggles. The message highlights the importance of community and compassion.

by Desirae June 8, 2019 2

David Fighting F.I.R.E.S.

4 Months Post VNS Surgery Update

David’s post-surgery updates reveal significant improvements. The family has successfully weaned him off Briviact, resulting in fewer and less severe seizures. Cognitive and behavioral enhancements are noted, with reduced reliance on other medications. David shows progress in learning and behavior, and they anticipate further improvements post-relocation to Jacksonville.

by Desirae May 4, 2019 1

David Fighting F.I.R.E.S. Desirae's Devotions

What Parenting my Chronically Ill Child Taught Me About Choosing Joy

The author reflects on their journey as a parent to David, who has a rare form of epilepsy. Despite facing numerous challenges and hospital visits, she emphasizes the importance of choosing joy amidst adversity. By creating joyful moments and celebrating David’s life, they find strength and hope in difficult times.